Tuesday, February 22, 2011

[Note: This is one of the series of letters that I posted to my friends and family on
Facebook between January and May of 2011. They are rough, raw, painful in spots and are completely representative of the level of understanding I had about Down syndrome at the time (read: precious little). Despite ump-teen years of nursing, I had very little understanding of what Intellectual Disabilities were and how deep my own ignorance ran.

This one in particular is our "birth story", full of high risk pregnancies, emergency C-sections, twins, medical stuff, diagnoses and post partum blues. -Jxox]

Life never ceases to amaze me. Not 12 hours after my last post, I was in BCH in labour. What are the odds?

After our plumber adventure and my trip to pick up Quinn, the day was pretty uneventful. Naps were attempted, TV was watched. I was feeling very slow and heavy, so I stayed in bed to rest even after Sean came home. As I lay there, I was planning my evening: find all the bottles and such, get the crib linen washed and on the crib, sort out the bassinets, find a few missing boxes of baby things. It was a short but important list. Sean called me for dinner and on my way downstairs I made a quick stop in the washroom.

Where my water broke.

All Sean heard was "Gaaaahhh!". Once he figured out it had nothing to do with his Beefaroni, we got moving.

The next 20 minutes were a blur as we topped up half-packed bags, fed our son and made plans for his sleepover. Luckily, my friend and I had sorted out the contingency details THAT MORNING. We piled in the van, the contractions hit and honestly, I don't remember much until I got in the ER doors and stumbled my way to the elevators to L&D. I'll spare you the details of the next three hours, but know that when I found out that my OB was on call, I may have been a little exuberant with my "OH THANK GOD!"

I had an emergency C-Section and other than an anesthesiologist who quite possibly thought he was an acupuncturist (OW!), it went reasonably smoothly. Once Mr. Jabby found the right spot, I was numb up to my chest (I could feel and use my arms this time, as opposed to the floating head phenomenon that I had with Quinn). Wyatt was born first, at 10:18 pm (4 lbs, 13oz). He was quickly whisked away to a warmer and I really didn't get to see him. I was about to say something when I felt a punch in the diaphragm from the inside. Seems Miss Zoe did not want to be born; in the words of the OB, she delivered the first baby, turned back and thought "where did the second baby go?", as both babies were head down at the start of the procedure. Zoe apparently did not want anything to do with what her brother was up to, had turned, crawled up as high as she could go and flipped over so that all the OB could find was her back. My OB spent the next few minutes trying to turn her manually (which meant more punches) so that she could be dragged kicking and screaming into the world. Which she was, at 10:21 (4 lbs, 1 oz).

Once she had been suctioned and I heard her cry, I turned my attention back to Wyatt's team who were clustered around his warming bed. They were too quiet. Then I knew.

I knew then, even before the Neo-natologist came over with his sheepish look and cleared his throat what he was going to tell me.

I knew that Wyatt has Down syndrome.

He spoke quietly to my OB for a few seconds before she loudly announced (as she was sorting out my insides) "Jennifer knows. She chose not to have the amnio... she knows a lot about this. She's a nurse. She knows. She knows about the heart. Just tell her." What he said then was that Baby A (Wyatt) appeared to have some of the physical characteristics and hard markers of Down syndrome. We would not know exactly or the extent until the cord blood samples came back in a few days. I have no idea what I said in reply, but he seemed to be accepting of it and shuffled off. Wyatt was brought up to me all bundled a few minutes later and I got to kiss my son before he was whisked off to the NICU. Zoe was brought shortly after that and all I could think of was how small she looked. I didn't get to kiss her before she too disappeared. Sean followed them and I was left with the team, talking shop with them whilst they cleaned and stitched me up.

I had to remain in recovery until I could move my legs and wiggle my toes. I have no idea how long we were there but I managed to con some jello and a cheese sandwich out of my nurse (remember, I didn't get my beefaroni). On the way to my room they wheeled me through the NICU; I got to stroke Zoe's foot and touch Wyatt's hand before I was in my room for the night. It was a long night too... I couldn't have any pain meds until after 4:30 and it was only Naprosyn and Tylenol at that point anyway.

I didn't get to hold my kids until much later the next day when I stupidly made the long walk to the NICU on my first ambulation. I spent three hours there, holding each one, talking to them and trying to not get all our tubes tangled up. It was hard leaving them and I was physically exhausted and in a great deal of pain. That little stunt set me back two days, but I'm happy to say that I am getting better.

As it stands now, they will be in hospital for weeks. There are a few milestones that they have to meet before we can entertain the idea of bringing them home. They are being fad mainly by nasogastric tube, but are encouraged to latch and have the occasional try at a bottle when they have the energy. They have to gain weight and to grow. They may come home together or individually. We won't know until we get there, basically. So far, any issues Wyatt has with anything seem to be due to his prematurity and not his DS.

Both are beautiful babies and have their own personality. Wyatt will be my cuddle bug, I can tell. He has beautiful almond shaped eyes that are blue with a hint of green in them and the longest eyelashes I have ever seen on a newborn. Zoe has no problem letting you know what she wants and has the brightest blue eyes that can melt your heart or stare you down (I have no idea where she gets that from either).

We're waiting for the results of Wyatt's cardiac tests, which should be available tomorrow. His cord tests came back positive for Down syndrome in all samples; we won't know the extent of his delays (if any) until we get there as well. It is what it is.

How are we doing? Quinn is on cloud nine about his new brother and sister. It hits Sean and I once in a while and I have at least one good cry daily and tear up frequently. I love my son dearly; that doesn't mean that I would ever have asked this for him. The grieving process is normal thing... I just have to let it happen (which, as you know, I'm not very good at). I am trying to go with the flow. It's hard, but I have to do it. I have to heal. That too, is what it is.

I am happy to note that neither of them has ever needed oxygen. They came off their IV's two days ago and just have their monitoring leads and NG tubes. Wyatt was moved to a crib yesterday; Zoe will need to stay in her isolette until she grows a bit. Wyatt has shown no signs of jaundice, while Zoe had two days at the spa, basking under the UV lamp (she hated it, BTW). Both are doing very well and are very healthy for preemies.

Both Sean and I would like to thank our friends and family for the tremendous support we have received over the last little while. From a few well placed words of support to looking after Quinn to making sure we remember to eat and sleep, it is all very much appreciated. The next little while is going to be rough, but it helps knowing that you are out there.

Wednesday, February 16, 2011

[Note: This is one of the letters that I posted to my friends and family on
Facebook when we received Wyatt's inter-utero AVSD diagnosis and learned
that there was a 75% chance of him having a chromosomal abnormality,
probably Down syndrome. These are rough, these are raw. They are
painful... and totally didn't have to be if I had any understanding
about what DS was in the first place. It is these early days that
prompted me to start Down Wit Dat... to educate and to effect change.
Down syndrome is not something that needs to be grieved. Ever. -Jxox]

Oh my.

It is very easy to remain positive in the face of good news. I've spent the last week as well balanced as a late 30-something year old pregnant woman with twins can be. Well, we can't be having that, can we?

After last week's visit to the High Risk clinic, my OB and I left it at "come see me in two weeks", "take your blood pressure next week", "have another ultrasound in two weeks" and "come in if there is a problem". You can imagine my surprise when her secretary called me on Friday to book an appointment for Tuesday. Not only did she call me when I was napping, but when she couldn't get a hold of me the first time, called my husband at work (who told her that I was probably having a nap). She then called me and booked me for what I thought was an office appointment at 1:15. With so few weeks left, I just chalked it up to it being the time for the weekly appointments.

Once again, I took my son off his school bus and brought him home long enough to visit the loo and pack him a lunch for our adventure. It was a good run in... the ice was melting, the glacier was retreating in spots and we were EARLY for a change. We walked into her office and found it clean and devoid of human life other than a very surprised secretary. It took a few minutes of explanation on both sides to figure out why I was there and not at the clinic; long story short I told her to call ahead and tell the clinic we would be late as we now had to take the bus the other way across town. Grrr!

Aside from being long, that trip was uneventful as well, other than I started to really wheeze and hurt as I walked. Normally I walk at about 3-4.5 mph as a rule, but I'm now down to a slow rolly-waddle with occasional breaks to catch my breath. I followed the instructions given to me by the receptionist and we toddled straight up to the third floor... only to be sent down to the ultrasound clinic to register again. My OB, the doll that she is, baby-sat my son while I took care of that bit of business (including the awkward explanation of why I didn't have my ultrasound requisition with me.) I got back to the third floor to find Quinn and my OB consulting over some of his drawings while a nurse stood by nodding in approval. What can I say, he's a ladies man. She went to quickly consult on a patient, I got a cheese sandwich into the boy and then it was my turn.

Quinn was drawing Mommy a card with roses on it, so I was chatting back and forth to him for the first while. My sonographer explained to me that we wouldn't be doing all the complex measuring today, rather we were checking to see how healthy and happy the babies were. There was a small bit of back and forth between us, but I really wasn't paying much attention until I heard "yeah, there's a couple of infarcts there". [record scratch]

I'm sorry, WHAT?!
Seems that Zoe's placenta has a "some" infarcts or areas of dead/scar tissue. I'm not sure how large they are or how much of the placenta is affected. This sometimes happens in normal pregnancies and I know that it happens a lot in Pregnancy Induced Hypertension (PIH) and Interuterine Growth Retardation (IUGR). It also happens near the end of pregnancy as the placenta starts to wind down. With my magic number still at three weeks, I wasn't happy to hear that. I was less happy to hear that Wyatt has dropped well into the pelvis (hence my trouble walking for the last few days) and that his placenta shows signs of starting to begin to break down. Damn... and blast.

I'm lucky that my sense of humour kicked in and I waved it all off as par for the course (either that or I've finally snapped, take your pick). At this point, seriously, what the heck else can I do? As it stands now, we (even more so than before) are going day by day. I monitor the babies daily, doing kick checks and whatnot, I spend even more time resting. I am on weekly trips to the High Risk clinic with weekly ultrasounds. We are still sticking with March 10th as our latest "go" date, but the reality is, I may get the tap next week. I may or may not get 24 hours to get my shit together before (depending on whether it is "planned" or "emergent" in nature). I wouldn't be worried if it wasn't for their little lungs and weight. 37 weeks with twins is good; 35 weeks (or less) is not as good and may mean some time on Bi-pap in the NICU while Mommy goes home.

My blood pressure, thankfully, is a few points down. I laughed and high-fived my OB; after the above news and a few other things this week, it should have been sky-high. I guess that is something in itself.

Today, my day includes remaining calm and dealing with the plumber. Yeah, we have a leak somewhere in the kitchen that is lifting the floor in front of the dishwasher. I guess that too is par for the course...

Wednesday, February 9, 2011

[Note: This is one of the letters that I posted to my friends and family on
Facebook when we received Wyatt's inter-utero AVSD diagnosis and learned
that there was a 75% chance of him having a chromosomal abnormality,
probably Down syndrome. These are rough, these are raw. They are
painful... and totally didn't have to be if I had any understanding
about what DS was in the first place. It is these early days that
prompted me to start Down Wit Dat... to educate and to effect change.
Down syndrome is not something that needs to be grieved. Ever. -Jxox]

After the last visit to the OB/High Risk Ultrasound clinic, I felt it was time to gain a little weight. It didn't hurt that my appetite magically turned on like a faucet either. Despite my previous size, I have had the hardest time gaining weight this time around; these twins are consuming me from the inside out. As you all know I had a really hard time early on with the nausea/vomiting; now the problem is just trying to eat with a stomach that seems to be a) lodged in my throat and b) the size of a small mandarin orange. As it stands now, I am nine (count them, NINE) pounds over my pre-pregnancy weight. It sounds lovely on the surface, but these babies need weight and with maximum four weeks left, they need it fast. So, I hit the pasta... and everything else that wasn't nailed down or at least moving slowly. Sean had bought a few packages of Chinese dumplings/pork buns, etc in the hopes of having them on Chinese New Year, but I ate them. Myself. One pack a night for a week. If you had peeked in my kitchen window at about 10pm, you would have found me drooling over a steaming pot. Say what you like about the nutritional content, but it was food, and fantastic. We have to get more this week... the popcorn and cheese and tomato sandwiches are just not cutting it.

Yesterday found Quinn and I on another "ultrasound adventure". You have to spin these things just right, to justify ripping him off one bus and tossing him on another while force feeding him a sandwich. We were a few minutes late, but that really didn't matter as the clinic was running an hour behind schedule. Keeping him occupied while trying to keep my eyes open was a bit tricky. However, eventually it was our turn and we tromped in.

The OB gave the sonographer her marching orders (with a wink and a smile at me "Did I miss anything, Jennifer?") and took her leave as I laughed and shook my head. Quinn then got to giggle a bit as once again, Mommy got covered in "icing" and we were off. I was ecstatic to learn that Zoe had not only gained weight, but she had rejoined her ORIGINAL growth curve. So at 4lbs even, she is well on her way to not being a NICU baby! Wyatt weighed in at 4.6lbs, so each put on between half and .7 lbs in two weeks. Yay babies (and yay dumplings)!

There was no other news from the ultrasound worth mentioning at this point other than things seem pretty good and I don't look like I'm going into labour just yet. In fact, I've been downgraded: I can see her in the office and continue with my ultrasounds in the regular clinic.

I asked her about my fasting sugar test (which I did January 10th and have been anxiously awaiting the results as I flunked the first one). She had to go look it up, but I was very pleased to hear that it too was normal. So, in the words of the BFF (who happens to be a Diabetic Educator) "If you don't get it now, you probably never will". In my words: "Pass the damn ice cream!".

Of course, we can't get through an appointment without some new drama cropping up and this time it was with me. I've been having some headaches lately (and chalking them up to weather/sinuses/stress) and it seems they could be reflective of my now increasing blood pressure. Now, to be fair, the result is the higher end of normal, but with a really low BP most of the time and up until now in the pregnancy, it could be the beginning of Pregnancy Induced Hypertension which could be very serious. Deathly serious. So, I've been sent home with instructions to RELAX, monitor my BP and if I get any additional symptoms to head directly to L&D. Roger Wilco.

So two new happy things and one more thing to try not to worry about. It's a fair trade, I guess. I'm trying to remain as calm and relaxed as possible; I try to fit in at least two naps a day, put my feet up all the time and try and seek out things that relax me (music, chilling in front of a fire watching TV, my ever faithful bathtub...). It sounds idyllic, I'm sure, but it just gives me more time to think up things that I should do before the babies come. Luckily, I have friends and family that remind me constantly that all will get done in time.

What You Have to Say About Down Wit Dat:

"Just wanted to let you know how much I admire you. I know you fight a lot of demons, both yours and for others, yet you still maintain that fantastic sense of humor, and more importantly, fairness. You are a constant source of light in the darkness, because you are beautiful inside and out..." - S. R.

"...Wonderfully written and one thing Jen does with her writing is make you stop and think ...and think hard." - J. Toner

"Before I had my little L., I never knew anyone with down syndrome, your page has given me so much hope for my little boy, the people who post pictures of their children and the things that you post are wonderful, its made it easier for me to understand and get used to, thank you, keep doing what your doing with the good work, much appreciation. X." - L. Barnes

"Your post (and the posts of others that you linked to) actually made me tear up a little. Growing up with a brother with Downs, I actually got into fist-fights because of "that word". Hearing it used as a derisive and insulting term by people who should know better (or by those who do know better but are just looking for attention in the case of Coulter) is NEVER ok. Thank you for speaking out.﻿" - I. Thomas

"I love these history posts. This is a TON of work on your part, thank you so much!" --N. Haegele

"I don't have any children yet, and I'm not sure how I ended up reading your blog. But it is absolutely inspirational. I'm so glad Wyatt was born into your family where I am sure he can live a happy fulfilled life." --artandtourism

"Above all, Jen is an amazing mother. She is honest and real, and inspires me everyday to love my "typical" child the way he needs to be loved, respect him as a person, and not even for one single second take him, or anything for granted. She allows me to venture into her life, and care about her and her family. What dear little children she has blessed the world with. She is planting seeds, nurturing and growing her family (and extended reader family) into people who will make this world a better place. Why aren't we all more like that?" —Penny

"Jen and her family have an amazing story and mission. Jen's writing reflects the difficult and triumphant steps of life with a special needs child; twins at that, and a older sibling. Thank you for sharing your families' strength with the on-line community."--S.B.

"I think I'm a little bit in love with Jen, and if she lived down the road I might just be a blogging groupie, not because I'm a crazy stalker I hasten to add, but because the easy warmth in which she tells her story convinces you that you are simply having an easy chat with your best friend. She has a subtle wit and craft to her blog posts, they are not just splurges of untamed emotion. This enables her to not only tell her story with honesty and in an enjoyable way, she also manages to impart a message without coming across as patronising or preaching. It's a rare gift for a blog about special needs."— Renata

"Having a child with special needs can be an isolating experience -- even more so when you live half a world away from your friends and family. Due to this, the internet became my primary source of support and camaraderie with other parents in similar situations. I read dozens, if not hundreds, of blogs about being the parent of a child with T21, and though most had positive points, for the most part they just didn't 'speak' to me and what I was feeling. Then came Jen and 'Down Wit Dat'. Suddenly, I heard a voice that was in harmony with the things I was feeling and going through. Her writing is so brutally honest, while at the same time insightful and informative...not to mention FUNNY! If there has been one thing I've learned on this journey, it's the importance of keeping your sense of humour -- even when you seem to be losing your sanity. Thank you so much, Jen, for putting out there the human, REAL side of our special club -- and being a voice for those of us that are so often unheard." — Dee

"I love the honesty, Jen never glosses over the difficulties and never fails to celebrate the victories. My children are not special needs but I can always find commonalities and it has opened my eyes to the fact that people with Down syndrome are not as different from the rest of us as they might initially appear. Since I've known Jen and been reading her blog my attitudes toward respect, and what it means, have changed. "The "r" word" particularly hit home as I had been ignorant to the effects of the use of that word. I do my best to help spread the message."--Susanne

"I have been following this blog for months now. I have nothing but positive thoughts and warm fizzy feelings when reading it. My only regret is not having found this blog when it was originally started. One piece that particularly sticks out to me, was the blog about the "r" word. I don't think I have actually cried so much reading a blog that wasn't about someone dying. I printed it off and shared it with many friends, because Jen is right. She struck a nerve and made me realize that not only myself, but there are many others around me that use that word without realizing how powerful it really is. Down Wit Dat is a blog full of enthusiasm, awareness, whole heartedness, truth, encouragement, laughter, but best of all, its full of Jen, FAMILY, and a look at what having a special needs child is about. Keep writing. You're amazing!" —B. Nason

"I love Jen's take on the special hand that she and her family have been dealt. I especially love that while she shares all her son's small victories she doesn't gloss over the challenges that she and her family face. The best thing I love about Jen and her blog is that she is constant supporter of the rights and challenges of kids and adults with Down Syndrome. She has provide a lot of insight that has opened my eyes and many others. I especially loved her blog about the "r" word. It opened dialogue with my family, friends and groups that I am a part; and I am much more conscientious about the words I used to describe people"--V. Saenz-Brown

"Jen's blog is wonderful! While I do not have a down child, as a mom, I relate to the everyday struggles of just doing your best, of the struggles, the heartaches, the joys of everyday life. Jen writes in a positive and uplifting style with just the right doses of humor thrown. Great read!" —Terra

"This blog is written from the parents perspective, which is important. Jen's story is not unique, but the way she tells it, with humor and honesty is wonderfully refreshing. It brings a real perspective that people can understand and relate to, and is a resource for parents of not just Down Syndrome kids but of all kids to know that life may not be perfect but that everyone has a unique way of dealing with it."—Kimberly

"I too am the mother of a down child. It gives me great giggles, sorrow, and camaraderie to read her blog daily. I find it makes life's little challenges more bearable. She is honest, upfront and a wealth of information. And I think her attitude is one many of us share and embrace. Even if she does not win, she is a huge winner already in my book. Lots of luck and love to her and her amazing family." —L.Grassa

"I love Down Wit Dat because Jen is so honest about her experience as a parent. Jen is not afraid to write about her vulnerability, anger, fear, joy, or love. She's an amazing writer! Jen's description of her blog is so bang on! I laugh and I cry, sometimes simultaneously."—Marla

"I am currently a Disability Services major in college and for my one class we had to find a blog by a parent who has a child with a disability to follow and discuss with the class every week. I have been following your blog for a couple weeks now and I get so excited to talk about little Wyatt and what an amazing family he has and the struggles and victories that you all over come daily! Someday down the road I hope to have children and if I am granted a special needs child I can only hope that I can handle everything that comes my way as positive and good as you do! You are doing an amazing job and are a great mother! Thank you so much for sharing your story!"--Anonymous

"Your blog is incredibly inspiring. I have laughed out loud, been in tears, and everything in between! it's fabulous." -HDSSG

"If you haven't been told today... you're awesome." - Trevor

"Wyatt is fortunate to have such a mom." - Anonymous

"...Thanks for your honesty and insightful points. It helps put our own thoughts into words to pass on when we encounter the same situations." - P

"I am enjoying reading your blog. I taught preschool/education for about 35 yrs and most of it was spent in CA where there is encouraged mainstreaming. I enjoyed having special needs kids...they bring a special and fun element into the classroom! I also had a young man with Downs who was my class helper at one time...he was so much fun! I wish people knew these things....as there are preconceived ideas..." - Jenny

"I remember speaking with you when you found out about the possibility of one of the babies having some abnormalities, and you did not know how you would handle it. My response was, once the situation arises you will find ways to deal with it. I must say, you have done so well with your children, especially with Wyatt. You are not ashamed to embraced what God has blessed you with, and to share your new found info with others who might be less fortunate, and to those who might be less accepting. I am sure you have empowered many people who are in the same situation and need a little love and support. You've turned negatives into positives. I must say you are an awesome mom. Keep up the good work, it not going unnoticed." - K. Garwood

"... I just started reading from the beginning... I am intrigued. It is so incredibly well written with so much love. There were parts I would start to cry. I felt your sadness and your happiness and your passion. These children are so lucky to have you as their mother. I can't wait to read the rest of it and get caught up!!! Thank you so much for sharing your life with us! ?" - M. Laine

"Just had a few minutes to read more of the blog and I must say I LOVE it! I could not agree more that so much of the info I found as a new mom was SO depressing. I didn't jump for joy with the dex of T21 but it wasn't anything I could change so we accepted -and started to read everything we could get our hands on. Can't wait to read more..." - E. Chesnut

"I wanted to say I love your blog. You write so honestly... Thank you for writing so candidly." - M. Antushevich

"Found your page completely randomly while trying to connect with other wine blogs like myself. I do not have any kids or know anyone with Down Syndrome but your blog really captivated me. I guess that is how good it is. Keep up the good work :) " - The Frugal Tasters

"There are going to be many times when i say how courageous you are! I do not think it can be said enough, you take YOUR time to educate and inform and rid parents of their fears! THANK YOU THANK YOU THANK YOU . I wish my kids were old enough to read and understand! Hopefully one day the maturity level will be there so they can and come to appreciate life more not for the big things but for the everyday moments that will mean more than the big ones EVER will! ?" - C. Cochran

"I, too have a son name Wyatt who happens to have an extra 21st! He was born 2/15/11! Thanks for sharing your story. We're in good company : ). " - R. Scheerer

"My daughter will be 8 in Nov. Unfortunately, my parents I felt were ashamed of my daughter. If only they had gotten to know her before they passed on....." - A. Welsh

"I always enjoy your straight forward, tell it like it is posts. People need this information. They need to know how their ignorant, or often well intentioned but uninformed, words and actions are frustrating, annoying and/or hurtful." - Shayna